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Personal identifiability is a fundamental question in the ongoing debate about the Icelandic Bill and Act on the Health Sector Database (HSD). If the data are personally identifiable, Iceland's international legal commitments indicate that a priori consent must be obtained from patients for the use of their personal medical information. The HSD Act presumes that one-way coding of personal identifiers renders the data non-personally identifiable and that therefore a priori consent is not required.
The history of the debate on the HSD shows that the concept of personal identifiability was initially based on a notion of 'considerable amount of time and manpower' as a criterion for defining personal identifiability. This definition comes from Recommendation R(97)5 of the Committee of Ministers of the Council of Europe on Medical Data. As a result of the Icelandic Data Protection Commission's opinion on the HSD, that concept was rejected and the resulting Bill and HSD Act adopted a definition from the European Data Protection Directive (95/46). The rejected concept, however, reentered with the idea that one-way coding of personal identifiers means there is no key that can be used to trace the identity of a person in the database.
The question of what constitutes a key in this context is of fundamental importance. The database will collect and link data from different sources on individuals over time and therefore the method of coding must remain stable. It is possible therefore to construct a look-up table, which constitutes a key. Keys can also be built from comparisons of patterns of family trees as well as by putting generally available information into context
The information in the Health Sector Database is personal information. Therefore reason and justice require that a priori consent be obtained from patients for the transfer of their health data to the database as Iceland's international legal obligations stipulate. Anything less is unreasonable and unjust.
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Personal Identifiability in the Icelandic Health Sector Database
http://www2.warwick.ac.uk/fac/soc/law/elj/jilt/2002_2/arnason
 peer-reviewed
Arnason, Einar
JILT
2002
Abstract: Personal identifiability is a fundamental question in the ongoing debate about the Icelandic Bill and Act on the Health Sector Database (HSD). If the data are personally identifiable, Iceland's international legal commitments indicate that a priori consent must be obtained from patients for the use of their personal medical information. The HSD Act presumes that one-way coding of personal identifiers renders the data non-personally identifiable and that therefore a priori consent is not required.
The history of the debate on the HSD shows that the concept of personal identifiability was initially based on a notion of 'considerable amount of time and manpower' as a criterion for defining personal identifiability. This definition comes from Recommendation R(97)5 of the Committee of Ministers of the Council of Europe on Medical Data. As a result of the Icelandic Data Protection Commission's opinion on the HSD, that concept was rejected and the resulting Bill and HSD Act adopted a definition from the European Data Protection Directive (95/46). The rejected concept, however, reentered with the idea that one-way coding of personal identifiers means there is no key that can be used to trace the identity of a person in the database.
The question of what constitutes a key in this context is of fundamental importance. The database will collect and link data from different sources on individuals over time and therefore the method of coding must remain stable. It is possible therefore to construct a look-up table, which constitutes a key. Keys can also be built from comparisons of patterns of family trees as well as by putting generally available information into context
The information in the Health Sector Database is personal information. Therefore reason and justice require that a priori consent be obtained from patients for the transfer of their health data to the database as Iceland's international legal obligations stipulate. Anything less is unreasonable and unjust.
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